The Long Delay to Diagnosis of Endometriosis
“How long did it take for you to get a proper diagnosis of endometriosis?”
The answers that followed opened my eyes to the fact that I am certainly not alone in the long delay between symptoms to diagnosis of endometriosis. The range of responses were from a year to 17 years, but for the majority it took over ten years!
Wow. This saddens my heart and has stirred up some emotions of frustration — teetering on anger. It shouldn’t take this long.
Endometriosis is a complicated condition and it does have a range of symptoms, so I somewhat understand why it is not immediately diagnosed, however I think that the symptom of painful periods should not be brushed aside as nothing. This is a sign that something is wrong.
Painful periods are not normal.
Not Listened to For Years…
One lovely endo warrior mentioned the relief she felt once finally getting a diagnosis. I can completely relate to this. After suffering for years and years in pain it is a struggle to not have this validated, but rather blown off as being “normal”.
How many times did I complain about the pain with my periods, the abnormal bleeding, the heavy bleeding, the digestive stress? To be blown off as normal parts of being a woman.
“It’s normal to have cramps with your periods.”
“Just take some Ibuprofen.”
“I get cramps too.”
Thing is — my cramps were not “normal” — far from it. But since this pain was all that I ever known in a way it was — my normal.
Another endo sister commented that during the long lapse of missed diagnosis that she “was not listened to.” Ugh. This hurts my heart.
Later I had an A-HA moment as I re-read these words — “not listened to.”
This came shortly after I listened to a beautiful lecture by Steve Bearman whose primary message was that all humans have an innate need to be listened to, and that by speaking about the pain and having someone really listen — that this practice alone is so, so healing.
The unnamed pain for me lasted for 17 years — from 12 years old to 29 years old. So much transition in this time from a young girl to a woman. From an innocent girl being introduced to intense pain each month to a young woman with the same pain and the realities of infertility.
During this time — these descriptions of of pain were tossed aside from health professionals, from family, from friends. Could this continuation of not feeling listened to contribute to the growth of this disease?
I think not being listened to has certainly caused me a lot of stress. I was taught to look to doctors for answers — they should be able to help with the pain. So to be told that it is normal, or worse that it is all in your head — this has an impact on the mind….. the oh so powerful mind 🙂
How would my life have been different if I was diagnosed at onset of the pain? It the pain was validated from an early age? If I had really been listened to?
On the Positive Side?
There was one lovely endo warrior who said that she was diagnosed shortly after the onset of her symptoms, at a young age, but only because the practitioner’s wife had endometriosis and he knew first hand the symptoms. This provides a sliver of hope.
I feel like I want to do something about this, but in the big scheme of things, I wonder how this is possible. I know that I cannot change the education of the doctors. I cannot change the missed diagnosis happening everyday.
This brings to mind wise words I heard recently — Do what you CAN do.
So what can I do? I can continue to spread the word, to spread awareness about this disease and hopefully down the line I can be apart of something bigger — a part of something that includes education for young girls to understand that painful periods are not normal. The pain IS real and it could be a symptom of endometriosis.
In return, I ask that you do the same. Keep talking about it. Periods should not be taboo. If we cannot rely on the medical system for answers, then we must be there for the women in our lives (especially the young women) who show symptoms of this disease.
As endo warriors it is our duty to spread the word.
What about you? How long did it take you to get a diagnosis? Did you feel listened to? How would things be different if you had been listened to?
I’d love to hear from you.